Facilitating more register research

How to create an epidemiological study design and which registers and databases can contribute to a research project are the kinds of question Fredrik Nyberg, new Visiting Professor of Register Epidemiology, can help to answer. Here he talks about his role, how register-based research can become more useful for health and medical care, and what 19 years as a scientist at AstraZeneca taught him.

“Being part of this strategic initiative gives me great pleasure. I see huge potential for even better use of Swedish register data, which actually include all the information about Swedish patients and Swedish healthcare that’s available, to benefit society and the patients.”

So says Fredrik Nyberg, who joined the University of Gothenburg’s School of Public Health and Community Medicine in January. His five-year Visiting Professorship in Register Epidemiology is part of a joint initiative from the University’s Sahlgrenska Academy, Region Västra Götaland (a major county council in southwest Sweden), and the regional Center of Registers organization. Nyberg’s most recent position as an epidemiologist at AstraZeneca, the multinational pharmaceutical company, lasted 19 years. He has conducted epidemiological studies, often based on register data, in areas including immunology, cancer, lung diseases, and cardiovascular diseases.

“When you need data on a great number of patients, collecting all the data yourself is almost impossible. It takes too long and is too costly. You depend on the data having been collected in another context, such as for a national register, a quality register, or some other form of database.”

Skills support for epidemiological research

As an epidemiologist, Nyberg has experience of using observational, non-experimental methods to study health-related conditions and the prevalence of disease in specific populations. His professorship is not focused on a particular disease area. Instead, his role is to provide supportive expertise in epidemiological research design and act as a facilitator.

“Researchers who have an interesting question and want to do register research may themselves often be clinicians or experimentalists, rather than epidemiologists. Here, I can contribute knowhow about epidemiological study design, research procedures, how to choose statistical methods, and how to understand and interpret the results in epidemiological terms.”

Connecting skills and resources

In his new role Nyberg will, for example, work for increased collaboration between Sahlgrenska Academy and the healthcare sector, especially the register center organization, consisting of Center of Registers Västra Götaland and Regional Cancer Center (RCC) West, and between academia and healthcare generally. The role suits a person who enjoys networking and collaboration.

“One of the things I appreciate most of all about epidemiological research studies is that they almost always need to be interdisciplinary collaborative projects. Good statisticians, skilled clinicians, competent methodologists, and people who know about project management are all needed.”

As for scientists, there is also a certain “detective” element in Nyberg’s work.

“I’ll be trying to discover connections between people with skills and whatever resources are available, by asking questions like who can use existing resources in the form of a register or database, or what resources may be advantageous for a researcher with specific expertise.”

Seeking greater relevance to healthcare

Nyberg wants to help generate new knowledge and benefit Sweden’s healthcare system and patients. He has ideas about how to make results from register-based research more useful for clinical practitioners.

“I think we scientists need to get better at responding to issues in healthcare and working to ensure that research addresses them. It’s also important for us to then feed the results back into clinical practice where they can be applied. Getting articles published in international journals isn’t ‘enough’ for us researchers.”

Medic with a keen interest in the environment

In 1984, Nyberg began studying medicine in Uppsala. After completing his internship in Falköping, he almost immediately embarked on research at the Institute of Environmental Medicine at Karolinska Institute.

“There was something of a ‘first wave’ of environmental thinking in Sweden. My PhD thesis was on passive smoking and lung cancer. More broadly, I also addressed the epidemiology of air pollution and, later, childhood asthma and childhood allergy as well.”

Environmental issues interest him immensely and he finds sorting waste, composting, recycling, and trying to be an aware consumer self-evident. In his free time, he likes to be out in nature — swimming and sailing in summer, near his holiday home on the island of Tjörn, and cross-country skiing or Nordic (tour or long-distance) skating in winter.

In 2000, after a year as a postdoc at the International Agency for Research on Cancer (IARC), in which Sweden participates, and a second period at Karolinska Institute, Nyberg was hired by AstraZeneca in Mölndal. In the pharmaceutical industry, he gained experience of engaging in costly activities. These were often preceded by lengthy planning phases, while priorities might change at lightning speed. He is used to following regulations and being the focus of attention. He has learned that when things need doing quickly and correctly, good processes are required.

Importance of research for registers

The Swedish personal identity number has enabled creation of registers based on enormous volumes of data. Nonetheless, there is development potential: This applies, for example, to quality registers in which efforts are underway to get more data reported and obtaining sufficiently high-quality data. Nyberg believes one may therefore ask not only what registers can do for research, but also what research can do for registers.

“As I see it, research on the data that exist anyway in a particular register can boost interest in that register and, in turn, lead to better reporting and data. That can bring about further and better research based on the register — a positive spiral. Studies could also show where else additional data are needed, which encourages registers to add more and new data, and to develop better features.”

Veteran “pioneer” who likes to get things done

Being brand new, the professorship in register epidemiology is a further challenge for Nyberg is to get some research of his own started.

“Right now, I have project ideas in areas like respiratory and cardiovascular disease, and diabetes. I’ve also got a bit involved in issues related to osteoarthritis and joint surgery. What counts now is to apply for research funding and start recruiting for a research group.”

Having his hands full seems to please him

“Yes, it’s really cool to be part of this strategic initiative. I’ve been very well received by both the University and Center of Registers in Västra Götaland Region, and I find everyone very positive. I see lots of opportunities to collaborate and help develop new knowledge that benefits healthcare, patients, and registers alike.”

TEXT AND PHOTO: Anna Vörös

Fredrik Nyberg in brief

Age: 58.
Lives in: Mölndal, just south of Gothenburg.
Family: Married, two adult children.
Pet: Cat.
Leisure interests: “For instance, I enjoy running, keep-fit exercises, reading, and having a fair amount of outdoor life.”
If I weren’t a scientist: “I’d probably have enjoyed being an engineer and working on something environmentally oriented — maybe environmental aspects of production, consumption, and everyday life.”